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» LymeNet Flash » Questions and Discussion » Medical Questions » how much do LLMDs differ - how to choose one?

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Author Topic: how much do LLMDs differ - how to choose one?
Sonoran
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Hello All,

I'm seeking an LLMD for a first consult. I tested positive for Lyme via Western Blot. I've had symptoms of chronic Lyme most or all of my 33 years of life. So has my son who is 8.

I'm seeking a highly knowledgeable, respected LLMD who takes the time to comprehensively assess and appropriately educate LD patients. I am able to travel outside of Arkansas to work with someone highly competent.

Can anyone more experienced with this advise me of how to choose an LLMD? How much do LLMDs differ in their level of knowledge and/or treatment approaches? I don't just want a referral to the geographically closest, I want to assess who could best help my son and I. How can I get the information I need to make that kind of decision?

And, BTW, I have read enough to be aware that some LLMDs are presently under legal fire. I'm not asking for names to be posted here, but please do let me know the best way to find a highly competent LLMD.

Sonoran


Posts: 15 | From Arkansas | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
David95928
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Hello Sonoran,
Welcome to Lymenet, sorry you and your son need it. You can post under "Seeking a Doctor" in addition to here so that more people see it. Others will be along. I'm sending you an e-mail.
David

Posts: 2034 | From CA | Registered: Jan 2003  |  IP: Logged | Report this post to a Moderator
rosesisland2000
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Don't know where you are in Arkansas, I am in Magnolia. But, you are in luck, for one of the best LLMD's in the country and very well respected in the Lyme Community and he is a member of ILADS, which is always best, is just over the Arkansas line into Missouri.

I see him, and my daughter and two granddaughters and I have an appt to see him in August.

You'll be much better off if you see him, I assure you. Dr. C is not under any "fire" that I know of and he treats very aggressively and has great "out-of-the-box" thinking and treating.

He gives you handouts that explain every detail of the treatment you can expect...he is very thorough. Anyway, folks from all over the country go to MO to see him, for he is that good.

Start here,
www.drcharlescrist.com

Rosemary


Posts: 6191 | From Arkansas | Registered: Jan 2002  |  IP: Logged | Report this post to a Moderator
Kara Tyson
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Usually people have very few choices. You usually have to pick the one closest to you. That might be 400--500 miles away. Could be less. Could be more.

The main differance as that these Dr.'s treat tick diseases every single day.

Information of Lyme changes every single day. Unless it is the Dr.'s main focus the changes are unlikely to be noticed (or believed) since they are not published in JAMA.

People will email you the names of Dr.'s.

LymeNet is the best.


Posts: 6022 | From Mobile, AL | Registered: Apr 2001  |  IP: Logged | Report this post to a Moderator
lla2
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there are many different llmds and many different ways they treat. some are very aggressive,some take it very slow and easy. some use herbs, some don't , some use hormone replacement and heparin therapy, some dont'...some believe in doing metal removal and some don't. some like to do ivs and some don't..some like spinal taps, some don't...

so you see, you need to get names of llmds and call them and ask their office what their 'style' of treatment is, and find what matches your style best.

for me that was a llmd who would allow and encourage alternative therapies like acupuncure, herbs etc.. along with abx, and one who would be aggressive with treatmetn and treat me for coinfections even without a positive test....he gave me options for treatment and let ME choose which way i wanted to go next....I was an equal partner...I like that.

But everyone likes different methods of treatment...and everyone has a choice. that's the best part. THere are excellent llmds out there for you to choose between. But the bottom line is it's your choice. Go under seeking dr. adn people will write you with phone numbers etc..
call theoofices, and get info on how each dr. works etc..what they do, what they allow, what alternative treatments they do etc...see what they're success rate is...

good luck..I went to two differnt llmds until I found one i love..it's a personal choice and you need to be 100% comfortable to get to where you can get 100% better////

best.
:Lisa


Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002  |  IP: Logged | Report this post to a Moderator
Sonoran
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Thanks to all who have replied to my postings via LymeNet and to my email. The information you gave has been helpful and is appreciated. Reading your kind words of support and encouragement has been like finding an oasis in the desert.

Because time is of the essence (symptoms are interfering with my ability to work) and travel funds are limited, I'm going to see if my family physician (HMO insurance) will refer me to Dr. C in Missouri.

Some of you asked me to let you know how things turn out. I will certainly keep you posted.

Best Regards,
Sonoran


Posts: 15 | From Arkansas | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Lymelighter
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LLMDs can differ in their protocols & regimens and thus one has to guide their preference based on how they respond to treatment. Some allow you to have a say in your treatment. Some take insurance, most don't.

It's also important to be mindful that we all respond differently to treatment. We were all bitten by different ticks and some of us have chronic Lyme & may not respond as well as other who were bitten more recently and/or are less ill from Lyme. I couldn't drive to to see my LLMD in while some of his other patients work full time, etc.

Some LLMDs are more aggressive & some are more conservative. For example one of My LLMDs who takes insurance had a one or 2 abx combo for all approach. He also didn't believe in treating Babs w/a - test with an antimalarial. Consequently, I made little progress on this regimen.

Another LLMD I saw who doesn't take insurance was more aggresive and treats metals & treats coinfections based on clinical findings.

On the down side; this same LLMD & his staff suggested I take steroids & other chelation drugs they Rx'd, which caused HORRIBLE SIDE EFFECTS and DISASTEROUS ramifications!

There's pros & cons to each methodology and thus I think you have to judge you LLMD based on your response to his/her treatment weighted against the safety of those treatments. Going by your gut isn't a bad idea either...


[This message has been edited by Lymelighter (edited 16 July 2004).]


Posts: 1010 | From Mars | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
rosesisland2000
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All in all, if you do see Dr. C in MO, you will be seeing one of the most respected LLMD's. You couldn't be more fortunate to live so close...well, that is if you don't live in South Arkansas like I do.

Here's what poster's on LymeNet have said about him in the past. And, yes, all LLMDs are not created equal...some are just plain better than others and the word gets around throughout the LYme community pretty quickly.

So far, I've yet to hear anything negative about Dr. C. Follow this post:

http://flash.lymenet.org/ubb/Forum3/HTML/004140.html

Where do you live in ARkansas? I don't need the town name if you don't want to give it.

Good luck,

Rosemary


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Sonoran
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Rosemary and Everybody,

I live in Little Rock, Arkansas.

Would welcome information on Arkansan Lyme resources and support groups. Would also welcome the opportunity to network via the internet with other people who are geographically close and struggling with Lyme. It would be great to be able to form friendships with people who understand - from personal experience - what it is like to deal with Lyme.

I genuinely cherish my present friends and expect that most of them will be sources of strength for me as I begin and maintain treatment, but I find myself yearning to form mutually supportive friendships with other people for whom the (life) stakes are equally high. Would like to meet people who understand the power of positive thought and positive word choice at the same time that they genuinely, gut-level accept that there will be days (though hopefully few) when misery and self-pity are the most we are capable of accomplishing. Am seeking people who think it is not only ok but essential to maintain a compassionate sense of humor while dealing with this profoundly challenging disease.

If you know of Lyme support groups or friendship circles around the Little Rock area, or would be interested in getting involved if I coordinated one, please contact me at [email protected].

Sonoran


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rosesisland2000
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Your choice of seeing Dr. C of MO, is a really good choice for you if you are wanting an LLMD who not only believes in the power of positive thinking, but, employs his patients to do just that.

In my most recent handout from him, he has a list of things to do, and, at the top of this list is for us to start thinking and saying positive things. He states that this is the cheapest thing to do towards getting and staying healthy.

As far as support groups here in Arkansas, there really isn't any that I know of. As you can expect, many of us Lymies are all over the state and thus, hard for all of us to get together. A trip for me to LR is about 2.5 hours and a very hard trip at that at times.

I wish you luck if you start one. You might start with an Ad in the Demo-Gaz. I believe that LD is more common in Arkansas than doctor's and people think.

A few years back the Army did assessments around the country at bases, and Camp Robinson was found to have ticks carrying LD. That came as a total suprise to my Vet who had just told me that there wasn't any LD in Arkansas.

When I showed him the Army's assessments and asked, sarcasticly, about the tick fence that they now have around that facility, he started to look at it differently.

If you would like that assessment, just ask and I'll find it for you. It's on-line, if you search yourself, just key in "Army Lyme Disease risk assessment" and you should come up with it, if not, let me know.

Rosemary

PS, If you'd like to meet when we go through LR to appt with Dr. C in MO, you can email me at [email protected] and I'll be glad to try and see you, prehaps for lunch on our way up on August 29th or 30th for appt with Dr. C on August 31th.


Posts: 6191 | From Arkansas | Registered: Jan 2002  |  IP: Logged | Report this post to a Moderator
   

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